Assessing health status quality of life in ALS: Comparison of the SIP/ALS-19 with the ALS functional rating scale and the short form-12 health survey(TM)

BACKGROUND: The progressive loss of function affects the quality of life of the ALS patient. Quality of life depends on a spectrum of factors. Availab le instruments for assessment include questionnaires developed for generic illness-related disabilities and ALS-specific questionnaires that focus on function. METHODS: Comparisons were made between two ALS-specific questionnaires (ALS Functional Rating Scale and SIP/ALS-19) and a generic instrument (Short Fo rm-12) given to 1513 patients from the (North American) ALS Patient Care Da tabase. RESULTS: The SIP/ALS-19 correlates well with the ALS Functional Rating Scal e and less well with the Short Form-12. CONCLUSIONS: The SIP/ALS-19 can be used as an effective surrogate for the A LS Functional Rating Scale, with the advantage that the SIP/ALS-19 also inc ludes questions that encompass the psychological and social domains of qual ity of life.